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Vulnerability and Preemie Parenthood

by Deborah L. Davis, Ph.D. and Mara Tesler Stein, Psy.D.

For most parents of preemies, some sense of vulnerability lingers after homecoming. Many parents find themselves vigilantly watching for any signs of trouble, ever ready to intervene and fearing that the saga of prematurity will never end.

Hypervigilance -- I'm not sure it ever completely goes away. I think I have developed an awe for my children, that they can overcome anything, but a fear that they may have a lot to overcome. As soon as one of them wheezes, I am taken right back to the panic of the ICU. I think I will always be afraid that I might lose them still. Every parent must feel that to some degree, but I know I probably check occasionally [to see] if they are still breathing. ~~Stephanie

Feeling vulnerable is a natural reaction to what you've been through. The more fragile your baby was at birth and the more precarious the hospital course, the more likely you will be to continue to see your child as vulnerable -- regardless of the current outcome. You may pay close attention to your baby's breathing, sleeping, and eating. You may watch anxiously for developmental milestones and work overtime to shield your little one from infection.

Like most preemie parents, we were quite obsessed with her "numbers" -- how much she ate and how much she weighed! I kept charts of everything! It was also weeks before I was comfortable while she slept. I had to check on her constantly, to be sure she was breathing. She visited the doctor weekly for a while, to be certain she was gaining sufficient weight. We also took her to a developmental clinic on a regular basis. ~~Renee

I will admit that I tend to be on the neurotic side of things ... but this whole experience with Nicholas has just about pushed me over the edge. I am constantly jumpy with him. If he doesn't eat well one day, I watch him like a hawk and have everyone up in arms in case there's something wrong with him. Whenever we go to the store, I clutch him to me as if I'm afraid someone might breathe on him, which in all truthfulness is exactly what I'm afraid of. ~~Sterling

I do remember being very paranoid about her health. A small child once tried to touch her fingers, and I almost screamed at him. I was always thinking, "Get away from my baby!" This was tough because we had our own toddler at home. But we always had her wash her hands before "playing" with her sister. It really bothered me when visitors would not understand. I guess you have to have been there yourself. One friend came over with her two-year-old daugher, who wanted to "touch" the baby. I asked her please not to. My friend's response was, "Oh she is very good with babies." I wanted to scream at her, "This is not the issue, you idiot!" Garms are very scary to preemie moms. ~~Linda

Acknowledge the risks

When you express concern about the risks of infection for your baby, others may suggest that you are being "overprotective." However, your vigilance is justified: parents of preemies have some very serious issues to worry about. When some of your friends and family tell you to relax and treat your baby "normally," they are really just expressing their wish that your baby were a regular, hardy kid. But wishing does not make it so. It is your job to be mindful of the real risks and to take precautions that will make a difference for your baby. It is also your job to be mindful of your baby's growing resilience and strengths, and to avoid impeding your child with your needless or unfounded worry.

Separating real from imagined threats
Distinguishing between reasonable fear and unreasonable worry can sometimes be difficult. You may sense that you overreact sometimes. You may know that your sense of vulnerability has een heightened by trauma. But your baby did spend time in intensive care and does need special handling. How special is something you must determine with input from trusted advisors (pediatrician, friend, family). It is perfectly appropriate to protect your infant from real risk. Doing so is not being "over-protective" -- it is being careful.

No matter what you do, though, your control over your baby's health is limited. This can make you intensely vulnerable.

I was very scared that Alison would get sick if she came into contact with someone who was sick. Since she was so little, this could have been deadly. It bothered me that everyone insisted on holding her (which we said no to many, many times) and getting in her face. ~~Stacy

If reasonable protective measures don't calm you, and you feel constantly anxious about your baby's health or development, your struggle may be less about the actual risks to your baby and more about your own feelings of defenselessness. Here are some suggestions for feeling less intensely raw and powerless once your baby is home:

Acknowledge your feelings without trying to justify them. You have been through a grueling ordeal. You don't have to defend your feelings.

Try to define what you fear most. Doing so can help you sort out what is generalized anxiety and what is specific and potentially preventable danger.

Gather information about what you fear. The more you know, the less you'll be haunted by unknowns. then you'll have more energy to attend to real risks and implement realistic protective strategies.

Ask your baby's health care providers what they consider to be the real dangers to your baby and question them about your worries. figure out sensible precautions that will reassure but not consume you.

Remind yourself that needless worrying and wondering can consume enormous amounts of time and effort -- all of which can be much better spent either enjoying your baby or nurturing yourself.

Wondering "what if?" can be a normal aspect of matering the ordeal you and your baby have been through. Some anxiety is constructive if it motivates you to do your best to protect and nurture your baby. But if you feel obsessed with the "what-ifs," you deserve to get relief. Find a mental health professional who can help you sort through these painful thoughts and feelings. If your distress persists, your therapist may discuss the potential benefits of using medication along with therapy.

Ask the nurse if you can have something with your baby's scent on it to take home with you. Smelling this item may help you feel close to your baby.

Separate imagination from reality. Are your anxieties based on imaginary scenarios about what might happen or are they based on what you have observed and what is actually happening. calm the worries that lurk only in your imagination and pay attention to those worries and intuitions that are related to things that are really happening. For example, are you anxious because you know iti's flu season and you can imagine the shoppers in your aisle sneezing near your baby while you're in the the grocery store? Or are you anxious because you've spotted someone who is sneezing, and your intuition tells you that this person is highly contagious? Spend your energy being vigilant about what is happening around you, and take the steps you need to safeguard your baby. Remember that your concern is what makes you an attentive parent, as long as that concern doesn't overpower your perceptions or your common sense.

Ask your baby's health care providers for an honest assessment of your baby's resilience, strength, and ability to overcome germs or other challenges. If you're the only one who feels your baby is fragile, ask yourself whether this is because others are clueless about the actual risks or because your baby is perhaps more robust than you realize. Let yourself entertain the possibility that your baby is not in jeopardy. when you look at your growing baby, do you still see that tiny, frail infant in the hospital? Let yourself see that strength. As your baby becomes robust, allow yourself to trust that progress.

Don't be afraid to get skilled help and respite. Even a few visits from a home nurse can be immeasurably reassuring.

Let your love come along with your worries. Try not to let the worry take the place of loving.

Remember that your child is on his or her own journey. You are not the one who has the power to change the ultimate course. Let go of your urge to have all the control, and you won't feel so powerless.

Remember your baby is a survivor in the strongest sense of the word! In the absence of evidence to the contrary, trust that if your little one could survive as a tiny infant in the NICU, she or he has already survived the toughest tests.

Give yourself the benefit of the doubt -- that over time, and as your baby demonstrates health and growth, you'll relax more.

She was so tiny that when she cried you could barely hear her. That changed as she gained weight, and I think that was a defining moment for me -- being able to actually hear her let out a rebel yell! ~~Janet

We made it through these first few months without any major sicknesses, and I am almost ready to let her catch something. I am not nearly as neurotic as I was those first few weeks. ~~Linda

Now I feel better because he's growing and he's getting tougher, and now I've seen him get sick a couple times this winter with a bad cold or a stomach virus and it hasn't affected him too badly. Like her reacted as a regular child. He's grown enough to cope with all sorts of germs, and he's ready to go out into the world. ~~Gallice

Riley had an apnea monitor at home for nine months. Even after she passed her home apnea test, I was scared to death to give it up. I didn't call the monitor people to collect it because it was reassuring, peace of mind, that is she stopped breathing, the monitor would go off. So that first night after she passed that test, she goes to bed, and I left the leads on because she still had the monitor and we were still gonna use it until I was comfortable with her not using it. .. In the middle of the night, I hear beep beep beep beep, and I look at her, and she's got the leads in her hand, all three of them. And I think, all right, she's telling me something. She knows that she doesn't need these any longer. She must know that she's okay, and I've got to -- as much as it's against everything I believe in -- I've got to trust her natural instinct in this. So I did. And I don't know if she ever stopped breathing in the night. That night I was up a thousand times, looking, listening. But it was a sign when she took those leads off. ~~Pam

Deborah L. Davis, Ph.D. & Mara Tesler Stein, Psy.D. are the authors of Parenting Your Premature Baby and Child: The Emotional Journey, a 2004 National Parenting Publications Awards "Gold Award" winner. They also collaborated on Parent: You and Your Baby in the NICU (2002), as part of the nationwide March of Dimes NICU Project. They've been invited to regularly contribute to Advances in Neonatal Care, a neonatal nursing journal; their first article appears in Spring 2005. They are the founding members of Partners in Perinatal and Pediatric Consulting, which promotes developmentally supportive care for babies and parents, as well as collaboration between families and health care professionals.

Dr. Stein is a clinical psychologist in private practice, specializing in the emotional aspects of coping with crisis and adjustment around pregnancy and parenting. She is regularly invited to lecture and give workshops on these issues throughout the country to conferences of physician and nursing groups, doulas, and lactation consultants. Since 1997, she has been consulting with organizations and providing training to health care providers, guiding their efforts to improve the level of psychological support and developmentally supportive care to families during and subsequent to perinatal crisis.

Dr. Davis is a developmental psychologist, researcher, and writer who specializes in perinatal and neonatal crisis, medical ethics, parental bereavement, parent education, and child development. Dr. Davis is the author of four books for bereaved parents, Empty Cradle, Broken Heart (Fulcrum, 1991; 1996), Loving and Letting Go (Centering, 1993; 2002), Fly Away Home (Centering, 2000) and Stillbirth, Yet Still Born (PILC, 2000). She is also on the Board of the Pregnancy Loss and Infant Death Alliance (PLIDA.org) and is regularly invited to write articles for professional periodicals and parent support materials.